Thursday, March 31, 2011
Well… what to write. I thought I’d share with you my emotional state lately. I’m having a hard time getting excited these days as last week I was hum, dee, da, my son is getting better. Until I got told by a nurse not to get too excited because he’s still not out of the woods yet. So I’ve been having a hard time dealing with different comments like- Oh he’s doing so much better. I know that he is doing better but I also know that if he does get an infection at this point a lot could happen. And I still have nightmares at times about him being on ECMO so I’m not getting a lot of sleep these days. Plus we were told that if he does get to that point again that he probably would not be able to go on ECMO again. I know… I shouldn’t be so down and think that he’s not going to get better but I guess until he’s out of the hospital I won’t feel totally sure that he’s going to live. And I hate the question “When’s he coming home?” because I still do not really know whether he will be able to come home and if he does it will still be a long time from now. Last week they were trying to wean him off the ventilator but the pace that they set was too fast for Benjamin. So they had to stop for a bit and then try again WAY slower. It’s also hard to leave him right now as when I come he starts crying and when I leave he starts crying. In between he has spurts where he’s happy but for the most part this week he has been really sad. And I am finding that hard to deal with. Sorry if this post is a bit down but I just thought that I should be transparent as you might wonder why I’m crying when Benjamin looks so good on the pictures. Anyway I’ll stop rambling.